The meeting involved a wide range of organisations with a focus on patient safety, including representatives from the NIHR Imperial PSTRC and Yorkshire & Humber PSTRC, the National Institute for Health Research (NIHR), Department of Health & Social Care, NHS England, NHS Improvement, Academic Health Science Networks (AHSNs) and Patient Safety Collaboratives, as well as researchers from other NIHR funding streams such as Programme Grants and Policy Research Units.

The focus of the meeting was partnership working to ensure the maximum benefit for patients and members of the public, as well as meeting the needs of the health and care system locally and nationally.

The work of the three NIHR PSTRCs was showcased to provide examples of translational research and partnership working, and also the importance of involvement and engagement, co-design approaches and patient and public involvement.

The collective aim is to develop a better and more responsive way for the full network of organisations funded by NIHR to work with patients and providers. Through this collaborative approach, best practice can be shared to ensure the prevention of poor and unsafe care, and the provision of effective and safer care.

In this series, we catch up with past Greater Manchester PSTRC PhD Fellows to see what they are doing now and how their PhD projects affected patient safety. This edition, our past PhD Fellow is Shoba Dawson.

What did you learn during your PhD project?

My PhD project explored how patient and public involvement (PPI) in health services research can be made more inclusive from the perspectives of people of South Asian origin and health services researchers.

While I learnt a lot about the topic area, I also learnt the importance of being tenacious and determined to reach the end goal. Through my PhD, I had a unique opportunity to work in collaboration with patient and public contributors, which not only enhanced the quality of my PhD project but was also a rewarding experience.

I believe that doing a PhD helped me to develop as an independent researcher through learning and developing a number of transferable research skills such as: determining the best and most realistic approach to answer a research question, considering the relevance and impact of the research project to diverse stakeholders such as patients, researchers and policymakers, and disseminating work to a wide range of audiences through different formats.

How has your PhD changed the patient safety landscape?

My PhD project was the first to examine the views and experiences of both researchers and South Asians regarding PPI in health services research. The findings addressed some of the gaps in knowledge regarding barriers and facilitators to involving people from black, Asian and minority ethnic (BAME) groups in PPI. It also identified some unique issues showing that PPI approaches need to be tailored to the group in question.

I hope my PhD has contributed (even in a small way) to understanding strategies to widening inclusivity in PPI in health services research and patient safety.

What you are doing now and where you see yourself going in your future career?

I work as a senior research associate at the Centre for Academic Primary Care, University of Bristol. I am working on two reviews in collaboration with researchers at the Universities of Manchester and Newcastle.

In the future, I intend to continue to build my research profile in evidence synthesis and contribute to improving primary healthcare services.

Vicki Moore joined the NIHR Greater Manchester PSTRC Safer Care Systems and Transitions theme as a PhD Fellow in September 2018. Prior to this she completed an MA in Healthcare Ethics and Medical Jurisprudence at the University of Manchester, before working at the General Medical Council in the Standards and Ethics policy team. Based on her previous academic and work experience, her main research interests lie in healthcare regulation and improving patient safety.

Although it is widely recognised that transitions of care pose a threat to patient safety, to-date the trend has been to focus on improving systems and communication between healthcare professionals. This research will therefore examine the role the legal system and health and social care regulators can play in reducing patient safety incidents at points of care transition; with a focus on learning from error to reduce further incidents.

As part of the PhD a series of articles will be published in order to stimulate discussion amongst academics, clinicians, and regulators. Through doing so, it is intended that this research will contribute to reducing future patient safety incidents at transitions of care.

This edition’s reflection comes from Stephen Barlow, a member of the public who is involved in the Marginalised Groups: Mental Health theme’s research advisory panel.

Why did you become involved in the ‘Mutual Support for Mental Health’ research advisory panel (supporting the mental health workstream in the PSTRC)?

I’ve had mental health problems for years and frankly the treatment I’ve received has mostly been poor. There are a range of reasons for this from lack of funding to frankly incompetence. If I can do anything to make future treatment better I will always get involved.

How do you think the Greater Manchester PSTRC has benefitted from your involvement – what difference do you feel that you made?

To me the benefit to the university is that myself and the rest of the group look at the project as members of the public, by which I mean that we look at what has been written ‘normally’ not in ‘uni speak’. In that way we translate the jargon into normal terms understandable to the whole public, not only academics.

How do you feel that you have benefitted from your involvement?

I feel that I’m part of something important and helping future treatment, and meeting people with similar stories to me.

Would you recommend becoming involved in research to other patients? If so, why?

Yes, simply because you could be part of something that could shape better treatment in the future.

Sally Giles (NIHR Greater Manchester PSTRC Research Fellow) and Angela Ruddock (Non-executive lay member of the Executive Management Board) are working with the FBMH Social Responsibility team to develop an involvement and engagement toolkit and checklist.

The aim of this will be to help both researchers who are new to involvement and engagement, and those who would like some extra guidance, know how to involve members of the public in their research.

The toolkit and checklist are currently in the very early stages of development, but it is hoped they will be piloted with NIHR Greater Manchester PSTRC staff later in 2019.

NIHR Greater Manchester PSTRC partner organisation the Health eResearch Centre was launched in 2013 as a network to bring together health data research and education across the north of England. More than five years later, HeRC has worked on over 40 research projects that use health data to improve public health and healthcare services for the benefit of patients.

Another key activity that HeRC highlights in the animations is its public engagement and involvement work. Through the public engagement campaign #DataSavesLives, HeRC strives to make it common knowledge what health data is, and how and why it should be used. #DataSavesLives has been used over 20,000 times by people and organisations over the world, and it’s been used to start discussions about health data at a variety of events.

Both HeRC and the Greater Manchester PSTRC place a strong emphasis on public engagement, with the Greater Manchester PSTRC having previously carried out events such as Objectified, which was an interactive exhibition exploring health, homelessness and marginalisation and ReVerse, two workshops which used poetry and spoken word to equalise the space between mental health service users and staff.

One of HeRC’s most important public engagement activities has been its 3-day Citizens’ Juries, carried out in partnership with Citizens’ Juries cic, where a panel of jurors, consisting of members of the general public, gathered to discuss difficult questions surrounding health data research. A panel of experts, from a HeRC researcher to a coordinator at medConfidential (an organisation campaigning for confidentiality and consent in health and social care), presented their cases for and against health data sharing.

The Citizens’ Juries proved to be an effective way of opening up a discussion about health data with members of the public, many of whom were initially distrustful towards the use of medical information in research. At the beginning of the Jury, one particular juror was ‘dubious’ about whether the medical records should even be created in the first place.

After being thoroughly informed about what health data is and how it is used, as well as hearing arguments for and against its use in research, the public jury made up its mind. At the end of the jury, 33 out of 34 participants voted in favour of the creation of the health database. ‘I think there should definitely be shared records and that the public should have to opt-out,’ stated the juror who had previously been unsure about whether the health records should exist.

In February, the Greater Manchester PSTRC is running its own series of Citizens’ Juries, which will focus on questions surrounding the use of artificial intelligence in healthcare, such as: ‘If you were given a diagnosis by a computer, and were given the choice, would you always prefer to be given an explanation of how the computer reached its diagnosis even if that meant the computer’s diagnosis was likely to be a little less accurate?’ For more information on the PSTRC Citizens’ Juries, click here.

The Health eResearch Centre hopes that its animated case studies will help to inform researchers, clinicians and members of the public of the benefits of sharing health data. Professor John Ainsworth, Director of HeRC and Connected Health Cities, said “Over the last 5 years HeRC has delivered across a broad portfolio of data intensive health research, team science, networking and public engagement. These animation case studies provide a great introduction to just some of our achievements. I hope you enjoy them and please do share them more widely.”

Preventing patient harm is a public health priority. Over 100 studies have been carried out across different countries in the past 20 years to estimate how often patient harm occurs, to understand its main causes, and to find ways of preventing harm from occurring or minimising its negative effects.

This important patient safety research has focused on hospitals and in primary care. We now know that around six percent of people from the general population experience an avoidable incident of patient harm whilst being treated in healthcare services (e.g. medication errors, misdiagnosis, wrong-site surgery etc).

We know virtually nothing about how common patient harm is in prison, nor what the main causes are, or how serious and lasting are the health consequences for affected people.

Currently, there are over 84 thousand people in prisons in England. People in prison often have complex needs with physical and mental health problems and drug or alcohol dependence being more common than amongst people in the general population. These health problems are in addition to other social issues such as poverty, unemployment, poor education/health literacy and homelessness. While in prison, people are away from their families and carers and at the same time they have few opportunities for self-care or to proactively prevent harm.

Prison is also a very difficult place to provide healthcare services. GPs are the main care providers for people in prison. Other common health services provided include mental health care, which is provided by psychiatrists and psychiatric nurses, substance use services, dentistry, and obstetric/maternity care for women. Patient harm can occur in any of these healthcare interactions but for people in prison, the recording of care, and the care itself, is not always joined-up.

The high percentage of turnover in prisons makes things worse. Turnover is particularly high among un-sentenced people. Transition phases such as the early phase of imprisonment or transfer to other prisons or back into the community are times when continuity of care can break down, with a likely increased risk of patient harm.

An award of £850K has recently been awarded by the National Institute for Health Research Policy Research Programme (NIHR PRP) to investigate the frequency and nature of avoidable patient harm in prison healthcare in England. This new and exciting research programme is led by Professor Jenny Shaw in partnership with several members of the NIHR Greater Manchester Patient Safety Translational Research Centre, as well as colleagues from the University of Nottingham and the University of Cardiff.

This research will generate the first estimates worldwide of how often avoidable patient harm happens, and the types of avoidable harm that take place in prison healthcare. As part of the work plan, a large study of 15 thousand patient records will take place across 12 prisons in England. Interviews are also planned with service users and other stakeholders.

The research will commence inApril 2019, with results expected in late 2021. For the first time, the NHS will have solid evidence of the nature and frequency of avoidable patient harm in prison healthcare and will be able to develop policies and plans to improve patient safety in prisons. This research will help practitioners in prisons to improve their working practices and patient groups to work towards making improvements to patient safety in prison healthcare.

Blog posts reflect the personal opinion of the author and are not endorsed by the NIHR, the NHS, the Department of Health and Social Care, The University of Manchester, The University of Nottingham or the Greater Manchester Patient Safety Translational Research Centre.